Lucy Henglefelt, with her husband and two sons, is on a mission to protect young women from heart disease.

Lucy’s Labor of Love to protect young women from heart disease

May 23, 2019

After a year of fundraising, Lucy Henglefelt was able to fulfill what she once considered a “pipedream.”

In April, she visited the Sanford House in Sioux Falls to donate $10,000 to create the Lucy’s Labor of Love endowment fund through the Sanford Health Foundation. Now and for years to come, the fund will help educate and provide financial assistance to young women with heart disease.

“My goal is to make sure no young woman or mother dies of anything heart-related,” she said. “As women, we always put ourselves last. We don’t know the warning signs, or we ignore them. That’s what happened to me.”

Lucy Henglefelt (at center) with Lori Visker (left), a business development specialist for Sanford Heart, and Lynn Thomas (right), the director of business development for Sanford Heart, at the Sanford House. Henglefelt credits Visker and Thomas with encouraging her to share her story.

 

Lucy’s story

With their two little boys tucked in for the night, Henglefelt and her husband, Adam, were up late cleaning. The next day, they were showing their house to potential buyers and were excited about the future for their young family.

But as Henglefelt walked from room to room, her breathing became more labored.

“It felt like an elephant was sitting on my chest,” she said. “I felt out of breath walking 20 steps.”

Henglefelt wanted to believe it was just the exhaustion of being a busy working mom. But a call to the My Sanford Nurse hotline convinced her to hurry to the ER.

“We have some major issues,” Henglefelt recalls a doctor at the hospital telling her. “We’re amazed you haven’t had more serious problems up until now. This could have been fatal.”

Henglefelt was diagnosed with severe systolic congestive heart failure, cardiomyopathy and a pulmonary embolism.

Her heart, she learned, was functioning at only 10 percent.

“Twelve hours earlier, I was living a regular life — just a normal 20-something-year-old,” Henglefelt said. “It was overwhelming and hard to come to terms with the diagnosis. It was a diagnosis for someone much older, not someone just starting their life.”

Henglefelt couldn’t stop thinking about her two boys, who were just 1 and 3 at the time.

“I was afraid that something was going to happen to me and my kids weren’t going to know who I was,” said Henglefelt as her eyes filled with tears. “There were a lot of late nights of crying.”

For Lucy, the diagnosis set in motion a whirlwind of appointments, testing, medication management and eventually the possibility of a heart transplant.

She still remembers that at the beginning of it all, one of the physician’s assistants at the Sanford Heart Hospital sat down with her to offer words of assurance.

“She said, ‘Lucy, live your life. This is not a death sentence. We’re going to get you through this. You’re not going to die.’”

“It was a very human moment,” Henglefelt said.

 

A mission to save lives

Today, a defibrillator and pacemaker implanted in Henglefelt’s chest help monitor and control her heart rhythm. With the additional help of a new medication, Lucy’s heart is now miraculously functioning in the normal range, diminishing the chance she’ll someday need a transplant.

“Life is pretty normal, which is good,” she says.

Looking back, Henglefelt realizes that she had dismissed the warning signs for years.

Since shortly after the birth of her first son, she had experienced periodic dizziness, fatigue and shortness of breath.

“I thought it was just my body acting weird and getting back to normal after having a baby, Henglefelt said. “We just didn’t know.”

If she had known the symptoms for heart disease, Henglefelt says she could have taken preventative action before things got so bad. She’s on a mission now to make sure other women have that opportunity.

In 2018, she initiated Lucy’s Labor of Love, an effort to protect young women, especially young moms, from heart disease, and support those who are facing it. She organized fundraising events and began speaking out and sharing her own story to raise awareness about symptoms.

“I really wanted to make an impact in my community and see women benefit directly,” she said.

While starting the endowment fund was a major milestone, her labor of love continues.

“It’s about more than just the money,” she said. “The fund is helping raise awareness. So many women have reached out to me who thought they were alone, and they’re not — we’re building a community. This is bigger than me. It’s going to live on.”

 

Contact the Foundation at (605) 312-6700 to learn more about supporting the Lucy’s Labor of Love endowment fund or creating a fund to support your own passions.